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  3. Polymyalgia Rheumatica and GCA

Shifting attacks of Polymyalgia

  1. curious to find out what they now feel is the cause of the pain other than the pred my doubting head feels all has not been explained but i hope they are right carolk

  2. Hi

    I was diagnosed with PMR in May and put on 10mg pred a day. I then saw a specialist who confirmed the diagnosis and started to reduce by 1mg in September. I too have cramps in my feet and thumb and wondered whether it was side effects. Also I am extremely tired and my ache and pain have come back in my shoulders and lower back.

    I felt I was moving forward but at the moment feel like I am going backwards.

    I have never done anything like this before but It is nice to read other peoples ideas and thoughts - as I know friends and family find it very hard to understand how I am feeling. My husband is a rock and looks after me when I am unwell.

    I am due to go to 7mg tomorrow and am a little apprehensive but because the discussion has covered the fact that it takes a few days to settle - I am more optimistic.

    Thanks and good health to everyone.

  3. afabchic

    You might be wise not to do your planned reduction (if you haven't already done so!) especially as you mention that you have aches and pains returning in your shoulders and lower back - that points to the inflammation not being under control which confirms the reason for you feeling like you are going "backwards".

    I note that your PMR was diagnosed in March and your starting dose was 10mg a day. That is an extremely low starting dose - 15 or 20mgs is considered the usual starting dose to knock the inflammation on the head.

    I hope the above helps but do come back and let us know how you are getting on.

    If you had blood tests at the outset that showed raised markers, then those should be repeated prior to each reduction - if the markers are still raised then it is a sign that the inflammation is not under control and the dose needs to be increased.

    I'm glad to hear that you have great support from your husband - I couldn't have survived without mine in the early days of my journey with PMR/GCA.

  4. afabchic

    The cramps you have are probably not a side effect of the prednisone. When I had PMR I didn't take prednisone but I had cramps in both feet. They'd last for about 10 minutes. I've had cramps before but they usually only lasted for 20 or 30 seconds. Hope this helps.

  5. i had cramp in the bottom of my feet and sometimes legs found out the omeprazole i was taking had this side effect ,stopped taking it and i hardly ever get cramp and when i do i take a drink of tonic water and it goes off quickly carol k

  6. Hi everyone.

    Many thanks for the interest. Based on what you have said I have made an appointment with my GP for next week and am carrying on with 8 mg. I have not had a blood test with him since May so I will speak to him about this also.

    When my GP asks how I am I usually say OK - this is comparing now with how bad I was and not how I feel today - probably should have let him know I was feeling pain and aches but it is hard to tell someone how you feel without seeming to be a wimp. Also, I thought the symptoms would get better over time not straight away. It is very confusing.

    I was not issued with a steroid card and I will be asking him about this also.

    This is very theraputic and I feel more empowered to speak to him in a knowledgeable way. I will post again after I see him.

    Many thanks.

  7. I agree totally with what the others have said - it's all too easy to blame pred for far too much! And as MrsO says - return of symptoms that you had at the beginning is a sure sign that the inflammation has started to increase, probably because you are reducing too quickly: the most common cause of a flare in PMR is reducing too far or too fast. It doesn't mean you won't get lower at some later date, just not now.

    And one thing that is really important - you must tell the honest truth when at the doctor. I'm unimpressed by many things GPs do (or don't do) these days out of sheer laziness, disinterest or ignorance and am up there when it comes to complaining about such attitudes BUT we have to be fair to them: if you don't tell them how you are they aren't mind-readers and work on the face-value of your report. You are not being a wimp by doing that, you are presenting them with the evidence they need to make a decision.

    You went to them in the first place because you were ill and unable to function normally. You are still ill, I'm afraid, the underlying autoimmune disease that caused the symptoms in the first place has not gone away because you are taking steroids. The steroid dose is managing the symptoms so you can lead a near-normal life and function. The idea of the reduction is to find the lowest dose of steroid that will achieve that. You can't reduce the dose until all the inflammation at the start has been eradicated - if there is any left and you try to reduce too quickly that small glowing ember will take advantage, get hotter and hotter and finally burst into flames again. If you are really unlucky you will need to go back to the beginning and start all over again. Often that means you have taken MORE steroid by trying to reduce too fast than if you had remained at a slightly higher dose that worked.

    That's why we suggest reducing by no more than 1 mg at a time, sometimes 1/2 mg is even better. You may be fine at 10 mg, your doctor says reduce by 2.5 mg and you aren't OK at 7.5 mg. If you had done 1 mg at a time you might have found that 9 was fine, 8 was fine, 7 wasn't so straight back to 8 and Bob's your uncle! That's just an illustration - it can happen at any dose and 1/2 mg CAN make that big a difference. The other thing we say is that pain that starts straight away after reducing your dose, within say a day or two, and then improves over the next couple of weeks is almost certainly your body objecting to a lower dose of pred but then getting used to it. If the pain/stiffness starts after a few days or more and then steadily gets worse over the next couple of weeks - then it is almost certainly that the pred dose is too low FOR YOUR DISEASE AT THE MOMENT. Go back to the last dose you were comfortable at as soon as you realise this. Leave it too long and you may need to go up a bigger notch to get the fire under control.

    And when you are reducing - give your body a chance! Clear the decks, cancel appointments and commitments you don't HAVE to do and lie low for a couple of weeks. It is totally unfair to reduce your pred dose and expect your body to summon up the pep to go on holiday, do the spring cleaning or look after the grandchildren over halfterm. Once you have been on pred for a few months your adrenal glands haven't been doing a lot. Once you get to below about 10mg you are in the realms of the amount they normally have to produce every day to keep you going at baseline. Adding in stresses of any sort means they need to do a bit more and so you will notice that the PMR is possibly more noticeable. Let them have a graded return to work - just as your employer should do after you being ill. It's only right and fair!

    Not only do you need to learn to tell your doc exactly how are progressing - or not - but you also have to learn to say no occasionally. Noone is going to die when you say "Sorry, I can't do that this week, maybe the week after next". If they are - then don't reduce yet. There is stress on the menu, that and PMR don't mix anyway and certainly not with a reduction into the bargain.

    Good luck!

    Eileen

  8. could not agree with eileen more just spent a weekend with my little granchidren on the friday my daughterinlaw said how much better i was moving but by sunday i could hardly move just from chasing around with the little ones ,it has to be slowly slowly catchee monkey ,but try telling that to a lively 16 month old we were glad to get home and slept the clock round !!!!!carolk

  9. Hi everyone

    Been to see my GP today and have agreed to go back to 9mg. Had a blood test which he wanted before I could ask. I am going back in two weeks.

    He was concerned when I told him I had said 'fine' when he asked how I was( not actually telling him that I was in pain) and I do feel he has my interests at heart. He said if the ESR level was not raised - we needed to look again at what was going on but would not elaborate - to be fair it was only marginally raised with the initial blood test.

    I now have a steroid card which he said the surgery had phased out last year. He had had some emergency appointments and I was very late going in to see him and it was obvious he had still managed to read my notes - so I feel I am gettting good care.

    I have felt a little better since staying on the higher dose rather than reducing so I will post again in a few days when I have a /or not reaction to the higher dose.

    Once again, thank you for all the replies - it is so good to feel part of a community even if it is ill health!!

    Good health - afabchic

    ps this site is VERY VERY hit and miss jumpy slow - or is it just me?

    PS my son in law calls me MRS O - how strange

  10. good luck with the increase etc let us know how you get on carolk

  11. afabchic

    I'm so glad to hear that you are feeling better now you are back on 9mgs.

    Although it's quite usual to have raised ESR and CRP blood test markers with PMR, there are a few sufferers whose blood tests remain normal throughout their treatment. and when planning reductions are guided by their symptoms alone.

    I do hope you continue to improve.

    From one MrsO to another! biggrin

  12. @afabchic - Just to reinforce what the other MrsO has just said: if your GP starts to think of backtracking on the PMR diagnosis because your ESR/CRP levels are "within the normal range" remind him (nicely) that approximately 1 in 6 patients with PMR don't have raised levels or it is possible that a figure that is within the normally quoted range is high for YOU. I am an example of the first case, I have never had an ESR above 7 in the entire time I have had the symptoms and it was the main reason the diagnosis was missed altogether for 5 years. It was that low even when I couldn't move with the stiffness and pain and even had some symptoms that would normally be associated with GCA.

    In the second case, the range that is taken by the medical world as being acceptable is from 1 to about 40 and once it is in the region of 40 they are talking about borderline. If mine is normally 4 (the usual reading) then if I were to get to about 20 that would be a very high reading for me and 40 would be really high. It is because of this that the diagnosis should be made on the basis of the clinical picture (your signs and symptoms) - ESR and CRP being high are icing on the cake confirming there is some inflammation somewhere in your body.

    You started on 10 mgs didn't you? Research in Italy a couple of years ago showed that 75% of patients responded to some extent within a couple of months to 12.5 mg/day - and 12.5 mg is quite a bit lower than the usual starting doses of 15 to 20 mg which generally get a very fast response. If you started on 10 mgs you would think therefore that it would take a few months to control the inflammation - May to September isn't long before embarking on a reduction from a dose that many of us would be delighted with after much longer than that - I'm on 10 mg after 3 YEARS, although I have been lower and had flares but I hadn't got to 10 mg in 6 months!

    Eileen

  13. Hi everyone

    I have just come away from seeing my GP with a gladdened heart! After the discussions, I decided to get mysef back on to 10mg a day where I felt comfortable. The pain has diminished and I feel really well within myself. My GP agreed this was sensible and we agreed to stay at this level for six to eight weeks. My ESR was down from 58 in May to 12 which does suggest I am getting things under control. Although I realise this is not a given. I think at 59 I was probably youngish and wonder if this could be a factor?

    I would like to ask everyone about a cough - not a bad cough - just a couple of times on waking first thing. I have seen it as a sympton but was just wondering if there was any further information,. This did start when I started in March with the PMR? I do not usually have coughs.

    I also want to add again that this chatting has and is helping tremendously and I can't thank everyone enough!

    afabchic

  14. Glad to hear you have a good GP who listens to you - and registers you'd been "soldiering on". And I'm even more pleased you feel better!

    One new approach that is being tried out in a pilot study is starting with 10mg using a formulation you take at night and I understand the idea is to leave the dose at 10mg for up to a year before embarking on any reduction. I think the idea is to aim to eradicate any left-over inflammation before reducing. It will be interesting to see if your ESR falls further whilst you are on 10mg again. As I said before, if your normal ESR is very low, like mine, 58 is pretty high.

    I had an irritating cough and almost permanent sore throat alongside the PMR symptoms and put it down to a post nasal drip but there was never any infection to be identified. In retrospect it probably is the PMR - and suggesting the arteries in the chest area are affected. It is somewhere between "just" PMR and some degree of GCA. It is only when the GCA gets to the arteries in the head that there is the risk of the blood supply to the optic nerve being affected and the possibility of visual symptoms arising. Cough is one of the commonly mentioned symptoms of GCA - but fewer sources quote it as part of PMR. We tend to be diagnosed on other criteria and you don't know if the chest arteries are involved if you don't do the right sort of imaging (a special sort of CT scan is required). This leaves a big gap between the characteristics of PMR, the stiffness in hips and shoulders and so on, and the head pains and visual symptoms of temporal arteritis, the other extreme of GCA. In the long term there is sometimes a bad effect on the aorta and surrounding large arteries leading to a potential for problems with them and this is something we should really be screened for. Needless to say we aren't!

    Does that answer your question or do you want more background?

    Eileen

  15. Hello again afabchic and it's good to hear that returning to 10mg has made you feel so much better. It's so hlepful too that you have a caring GP who is prepared to work WITH you.

    With regard to the cough, I have read the following:

    "What are the warning signs of polymyalgia rheumatica?

    The warning signs of polymyalgia rheumatica include:

    Severe pain and stiffness in the neck, shoulders, lower back, hips or thighs

    Low energy and fatigue.

    Profuse sweating during sleep. This is called night sweats.

    Loss of appetite.

    Slight fever.

    Anemia. This is a condition of the blood that can cause a person to look pale, and feel weak, sleepy and dizzy.

    Depression.

    The warning signs of giant cell arteritis include:

    Tenderness of skin on the forehead.

    Redness and swelling of the blood vessels on the side of the head. These may be painful to press on.

    Changes in vision such as blurred vision, blind spots or seeing double.

    Pain in the jaw, often while chewing food.

    Dizziness.

    Problems with hearing.

    Sore throat and coughing."

    As PMR and GCA are very closely linked, then it could be that you are slightly further along the spectrum towards GCA and, as Eileen has suggested, the arteries in the chest area might just be affected. The BSR Guidelines state that a chest radiograph may be required as part of the basis for the diagnosis of PMR - perhaps your GP would arrange this for you to put your mind at rest?

    Just a thought: I presume you aren't taking medication for high blood pressure as I know that ace inhibitors in particular can cause a persistent cough?

    Keep well! :D

  16. Hi Eileen and Mrs O

    Thanks for the posts. I fortunately don't have any other symptons re GCA but do have ongoing allergic rhinitis and also sinusitis (forgive spellings) so, when I reduced to 8 the symptons for both did return somewhat having been dormant since I started taking the steroids. I will keep an eye on it though and when I go back to my GP in mid January, I will update him and see what he suggests. Also no sore throat. An ounce on knowledge is very valuable.

    I am not on any other medication at all and my blood pressure is within normal limits. so good there then. In fact the only medication I have ever taken is for my allergies - house dust mites, eyelash mites, hay, cement dust and too many other things to mention - you name it I am allergic to it! it is also all year round which actually reduces me to almost invalid at times - I can sneeze up to 50 times on a trot - very tiring! And an almost non stop runny nose and sore eyes - so being on the steroids has helped that enormously. Every cloud.......

    Thanks again - afabchic

  17. afabchic

    My son would so empathise with you regarding the allergic rhinitis - house dust mite, cut grass etc. He gets a persistent little cough, probably when he forgets to dust his house for a month, or two or three!! rolleyes I haven't heard of eyelash mites though - sounds really uncomfortable. It must have been wonderful to have some respite from all that whilst on the steroids - proves they're not such baddies after all. wink

  18. Hi all friends in the forum! I haven't been in touch since before last September. Our telephone line was out of action for two months and also the computer. finally we wired it up to our neighbour's one through the basement.

    I went to see the Nh Rheumatologist who let me up my steroids to 10 mg over the period of my son's weddings hen I began decreasing them slowly. this Rheumatologist says I don't have Polymyalgia but bursiitus. I like his approach because he genuinely seems to want to solve the aching, but I don't really agree with him. However I have e decreased now to 3 mg and am fairly well. I am terribly stiff in the morning and in pain with hips and walking until I have sat down for a bit and taken Nurofen Plus. I cannot manage my day without Nurofen. I still think I do have Polymyalgia but am willing to try and get off Prednis.So far I am sort of managing as. Long as I stop and rest every hour or so.

    I hope you are all Ok? CaroleK, EileenH and Mrs O and others on this forum.

    Best wishes and looking forward to hearing from you again.

    Cosima

  19. i dont think needing pain killers and rest every hour sounds like the pmr has gone why is there this great haste by your gp to remove the one drug that controls pmr , does he know how you are having to cope ,i suggest you need to have another talk with him and clarify how you are both going to manage this .good to hear from you keep in touch carolk

  20. Hi there Cosima

    It's good to hear from you again and that following your decrease to 3mg you are "feeling fairly well" although in that case I'm a little confused to hear that you cannot "manage your day without Nurofen".

    Many PMR sufferers also suffer with bursitis so I don't understand why your rheumy is saying you don't now have PMR - rushing to get you off steroids now could cause a severe flare in inflammation and result in you having to increase way back up. Plus you have a 'gut feeling' don't you that your do still have PMR.

    I had a severe flare at 3mgs necessitating an increase back to 10mgs to get it under control. It can be quite difficult to reduce at these lower levels and many of us find that we have to stay at doses below 5mg for a 2-3 months to avoid flares.

    If it was me, I would be inclined to request ESR and CRP blood tests (that is if you are someone who had raised markers at the outset of PMR) and seek the opinion of another rheumatologist.

    I do hope your son's wedding went really well and with them a wonderful future together.

    MrsO smile

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